Quality of Life in Myelodysplastic Syndromes and Physicians' Perception.

Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 3822-3822
Author(s):  
Esther Natalie Oliva ◽  
Valeria Santini ◽  
Poloni Antonella ◽  
Vincenzo Liso ◽  
Daniela Cilloni ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Myelodysplastic Syndromes ◽  
Conflicts Of Interest ◽  
Univariate Analysis ◽  
Laboratory Data ◽  
Well Being ◽  
Prognostic Scores ◽  
Experimental Drugs ◽  
Therapeutic Choice

Abstract Abstract 3822 Poster Board III-758 BACKGROUND The heterogeneous nature of myelodysplastic syndromes (MDS), age- and disease-related factors (complications and progression to acute leukemia) are associated with the complexity of quality of Life (QoL). Patients are offered mainly non-curative or experimental drugs and/or supportive care. The exploration of QoL in MDS is a prerequisite for adequate therapeutic choice. METHODS We designed an observational study in MDS patients with IPSS risk score ≤2 to evaluate determinants of QoL and its correlates. Clinical and laboratory data were collected up to 18 months and QoL instruments (QOL-E v.2, LASA scale, and EQ-5D) were completed by patients and physicians (both blind to each other's responses) at baseline, months 1, 3, 6, 12, and 18. After diagnosis, treatment was assigned based on investigators' judgment. RESULTS Of 148 patients enrolled (mean age 72 years, 56% males), 115 (78%) patients were anemic at diagnosis and 38 (26%) had already received transfusions. Mean (± SD) Hb was 10.3 ± 2.1, ANC 2.3 ± 1.9×103/μL and PLT count 155 ± 118×103/μL. Charlson's Comorbidity Score was > 1 in 33 (22%). Physical and functional QoL, health, energy, activity and general states were generally poor (<65). In 94 cases ECOG PS was assigned a 0 (best) value, though 36 patients had a physical QoL-E score < 60. Surprisingly, there were significant correlations between patients' and physicians' QoL-E scores in all but those regarding the disturbances due to dependency on hospital and staff and to the inability to travel. However, MDS-specific well-being was systematically overestimated by physicians in the MDS-specific domain (p<0.0001). After 12 months, 94 patients have completed the QoL instruments. There was a transient increase in Hb with parallel changes in QoL and no significant change at 12 months (only MDS-specific QoL-E scores worsened from 79 ± 17 to 73 ± 22, p=0.005). At univariate analysis, Hb correlated with all QoL-E and LASA activity scores at baseline. After 12 months, Hb correlated with social, fatigue, MDS-specific, health status and LASA scales, while transfusion dependence with MDS-specific QOL-E scores (p<0.01). At multivariate analysis (Table), major determinants of QoL at baseline were comorbidities, IPSS, and Hb; at 12 months QoL was independently predicted by age, comorbidities, transfusion-dependence and mainly by Hb, while thrombocytopenia (PLT < 50000 microliters) and neutropenia did not seem to have a relevant impact. CONCLUSIONS QoL, together with prognostic scores, should guide therapeutic choice in MDS. Avid research in MDS tends to focus on younger and fit patients to offer more aggressive or novel therapies with the aim of increasing survival. However, patients of advanced age with comorbidities complicated with severe anemia and transfusion-dependence represent a fragile category with particularly poor QoL that actually require special therapeutic attention to favor transfusion-independence and possibly an hemoglobin response. Disclosures: No relevant conflicts of interest to declare.

Home Azacitidine Administration in High Risk Myelodysplastic Syndromes: Favorable Results of a Pilot Study in 48 Patients

Blood ◽  
2011 ◽  
Vol 118 (21) ◽  
pp. 1719-1719
Author(s):  
Sylvestre Guillevic ◽  
Thibault Comont ◽  
Jonathan Khalifa ◽  
Christian Recher ◽  
Daniel Adoue ◽  
...  
Keyword(s):  
Quality Of Life ◽  
High Risk ◽  
Myelodysplastic Syndromes ◽  
Conflicts Of Interest ◽  
Age Distribution ◽  
Hospital Administration ◽  
Number Of Cycles ◽  
Home Administration ◽  
At Home

Abstract Abstract 1719 Background: Myelodysplastic syndromes (MDS) affect elderly patients. Azacitidine represents the gold standard treatment of high risk MDS. French health organization allows home chemotherapy administration after the first cycle of treatment. We decided to develop a home administration program of this drug. Moreover we hypothesized that this modality of treatment will improve patient's quality of life. Patients and methods: after one cycle in hospitalization, high risk MDS patients who were agree to receive home chemotherapy were included in the study. As recommended each first day of Azacitidine cycle was still administrated at hospital. Due to drug instability a quality statement was created to control all steps of administration (including storage temperature before administration). Feasibility and safety were evaluated. Comparison between home or hospital administration was performed: number of cycles, dose, tolerance, problems of administration. Results: 68 patients were included in the home chemotherapy program, 75% were MDS patients and 48 received Azacitidine. Age distribution was 7 patients 60/69 yrs (14%), 22 patients 70/79 yrs (46%) and 19 patients 80–89 yrs (40%). More than 2000 days of hospitalization were performed at home during a 18-month period. Similar median number of cycles and delays were observed in the two groups as well as same level of adverse events and hospitalizations between 2 cycles. In few cases administration was not possible at home due to unresolved infection, cytopenia or drug availability (excessive time between preparation and distribution). No patient was excluded of this program. Discussion and conclusion: home administration of Azacitidine was safe and feasible. All patients agree to continue this modality of administration and high level of satisfaction was observed. Next step will consist in a randomized study to compare quality of life between home and hospital administration of the drug. For this population of patient home treatment will represent an alternative which could improve quality of life as observed for children in ALL (1) or in colorectal cancer (2). Disclosures: No relevant conflicts of interest to declare.

Quality of Life Outcomes of the Age of Blood In Highly Transfusion Dependent Patients with Myelodysplasia: Prospective Randomized Controlled N-of-1 Studies

Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 4411-4411 ◽  
Author(s):  
Justin Chia ◽  
Maayan Seitelbach ◽  
Ian H. Chin-Yee ◽  
Cyrus C. Hsia
Keyword(s):  
Quality Of Life ◽  
Myelodysplastic Syndromes ◽  
Conflicts Of Interest ◽  
A Priori ◽  
Blood Transfusions ◽  
Fresh Blood ◽  
Novel Approach ◽  
Significant Difference ◽  
Clinical Benefits

Abstract Abstract 4411 Introduction: Anemia is the most common objective manifestation of the myelodysplastic syndromes (MDS), and excessive fatigue is experienced in over 80% of patients. Transfusion is essential for the management of anemia in these patients. Past studies have investigated the age of transfused blood and its effect on outcome in various acute clinical settings such as critically ill, post-cardiac surgery, trauma, and brain injury patients. However, few studies have investigated the age of transfused blood in chronically transfused patients such as MDS and its impact on quality of life (QoL) and hemoglobin (Hb) levels in these populations. Methods: The aim of our study was to compare QoL outcomes between fresh (transfused within 7 days of donation) and standard issue (transfused between 8 to 42 days, mean 20.5 days locally) blood in highly transfusion dependent patients including those with MDS. The Functional Assessment Cancer Therapy Anemia subscale (FACT-An) was utilized for QoL assessment in a series of prospective “N-of-1” trials design. An “N-of-1” study was performed for each of the participants. Each participant was randomized to receive a total of four transfusions of fresh blood and four transfusions of standard issue blood. Randomization tables were created for each participant “N-of-1” study a priori. The participants, nurses and investigators were blinded to the age of blood administered. Prior to each transfusion, and again after 24 hours, participants completed the FACT-An survey. Post transfusion Hb levels were measured prior to a subsequent transfusion. For each FACT-An parameter and Hb level, mean results were derived for the four fresh blood transfusions and for the four standard blood transfusions. These were analyzed using an unpaired Student's t-test. Results: Twenty patients were enrolled into the study at the London Health Sciences Centre (LHSC), London, Ontario, Canada. Participants included 8 males and 12 females with a mean age of 64.5 years. There were a total of 13 MDS participants (5 males, 8 females) and seven participants (3 males, 4 females) with other diseases that required them to be transfusion dependent. At the time of abstract submission, 1 participant has completed his “N-of-1” study. For this one individual, analysis comparing the pooled results of the four fresh blood transfusions versus the pooled results of the four standard issue blood transfusions was done. No significant difference was seen between fresh blood transfusions versus standard blood transfusions for all of the FACT-An parameters and post-transfusion Hb levels. Conclusions: Improving QoL is an essential component in the management of chronic diseases such as the myelodysplastic syndromes. We have designed a series of “N-of-1” studies to detect a potential difference between fresh versus standard issue red blood cells. The preliminary data from a single participant who has completed this “N-of-1” study suggest that there is no significant difference in QoL measures and Hb levels. The study has fully enrolled and demonstrated the feasibility of this novel approach to evaluating the clinical benefits of transfusion. To our knowledge this is the first reported “N-of-1” study in transfusion. Disclosures: No relevant conflicts of interest to declare.

scholarly journals Changes in Quality-of-Life Parameters in Patients Receiving Therapeutic Interventions for Cancer-Associated Anemia: A Systematic Review

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 2142-2142
Author(s):  
Snigdha Marivada ◽  
Sandhya R. Panch ◽  
Kamyab Pirouz ◽  
Chhaya Kamwal ◽  
Alexandra Dreyzin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Prospective Studies ◽  
Conflicts Of Interest ◽  
Intravenous Iron ◽  
Well Being ◽  
Therapeutic Interventions ◽  
Eligibility Criteria ◽  
Drug Interventions

Abstract Introduction: Cancer-associated anemia (CAA) is multifactorial in etiology and can occur due to the malignancy itself or as a side effect of the treatment. The prevalence of CAA can exceed 90%. Several studies have reported positive correlations between increased hemoglobin (Hb) and improved health-related quality of life (HR-QoL) measures including fatigue scores and scores for physical, mental and social well-being. However, Hb increases and extent of improvement in HR-QoL measures varied by therapeutic interventions (Oral/intravenous iron, erythropoietin stimulating agents (ESAs), transfusions, and/or others), as did HR-QoL tools used in these studies. We conducted a systematic review to identify final target Hb levels as well as changes in Hb from baseline that resulted in significant improvement in HR-QoL parameters following interventions for CAA. We also sought to identify HR-QoL tools that effectively and comprehensively captured symptomatic improvement following Hb increases in patients with CAA. Methods: Randomized Controlled Trials (RCTs) and prospective studies which evaluated HR-QoL changes following drug interventions for CAA were identified through searches of the CINAHL Plus, Embase, PubMed, and Web of Science for articles in English from 1997-2021. Inclusion criteria were: RCT or prospective study; patients with CAA; a HR-QoL was used. Two reviewers independently screened abstracts. A third reviewer resolved disagreements. Bias assessment was performed using Joanna Briggs checklist. Results: Of the 8243 studies identified of which 1718 were duplicates and 6525 records were screened at the title and abstract level. Of the 59 full text articles reviewed, 38 articles met our eligibility criteria (Figure 1). A total of 19 RCTs and 19 prospective studies were identified. On average, studies were conducted over 14.2 ± 5.5 weeks, with a mean of 546 ± 693 study participants in each study. 23 studies provided information on the number of enrolled participants completing study. Mean study completion rates among participants was 70 ± 1 (%). A summary of HR-QoL measures utilized in the various studies is presented in Table 1. Hb changes and HR-QoL score changes were reported consistently in 30 studies and are presented in Table 2. Therapeutic interventions for CAA included ESAs (n=19; 65.5%), Oral/IV iron (n=1; 3.4%); transfusions (n=2; 6.9%), other agents used in specific conditions (luspatercept (MDS)) n=1; 3.3%, or combinations of these (n=7; 24.1%). Overall, 78% of studies that reported an Hb increase following drug interventions for CAA also reported an improvement in HR-QoL measures. Mean Hb increases was 1.9 g/dL. Median change in the most frequently used HR-QoL (FACT-An, FACT-F) was +3 points (Range: 0-4). Studies utilizing transfusions as the intervention for CAA reported the lowest final Hb (8.8 gm/dL) as well as the lowest change in Hb (Δ Hb= 1gm/dL) levels from study onset to completion. These studies also reported the least improvements in HR-QoL scores. HR-QoL tools used in transfusion-based studies were variable. With regard to other outcomes measured in the various studies, raising Hb levels by various interventions did not significantly impact bleeding scores, infections, hospitalizations, or mortality. Conclusions: Our data suggest the need to identify optimum Hb thresholds (final target Hb levels as well as changes in Hb levels from baseline) that result in meaningful improvements in HR-QoL parameters following the use of any therapeutic intervention for CAA. Specifically, studies utilizing transfusions alone as intervention for CAA may not reach the optimum threshold (&gt;11gm/dL or a Δ Hb of greater than 2 gm/dL) to result in meaningful improvements in HR-QoL measures as has been shown in studies utilizing ESAs or iron or a combination of these agents. Further, it is imperative for studies in transfusion medicine to identify appropriate HR-QoL tool/s that comprehensively capture all aspects of well-being related to CAA. As such, studies may need to utilize more than one HR-QoL tool that gathers information on physical, social and emotional well-being before and after transfusions, while balancing the risk of questionnaire fatigue. A meta-analysis of our systematic review is ongoing and will provide additional information on data gathered thus far. Figure 1 Figure 1. Disclosures No relevant conflicts of interest to declare.

scholarly journals Feasibility of Peri-Transfusion Quality of Life Assessment for Patients with Myelodysplastic Syndromes

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 25-26
Author(s):  
Gregory A. Abel ◽  
Heidi D. Klepin ◽  
Emily S. Magnavita ◽  
Tim Jaung ◽  
Rory M. Shallis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Myelodysplastic Syndromes ◽  
Conflicts Of Interest ◽  
Performance Status ◽  
Life Assessment ◽  
Ecog Performance Status ◽  
Before And After ◽  
Ecog Ps ◽  
Rbc Transfusion

BACKGROUND: Decreased quality of life (QOL) due to fatigue in the setting of anemia is common with myelodysplastic syndromes (MDS), often leading to dependence on red blood cell (RBC) transfusions. Moreover, the COVID-19 pandemic has resulted in considerably reduced blood supply such that the importance of conserving donor RBCs for patients particularly in need is even more crucial (Shander, Anesth Analg 2020). While some patients with MDS experience improved QOL after transfusions, many do not, even at the same ECOG performance status (PS) and hemoglobin (Hb). In a pilot study, we sought to assess the feasibility of a peri-transfusion QOL assessment (PTQA; QOL assessed before and after transfusion) to determine if it could help inform future transfusion decisions for patients with MDS. METHODS: Starting in 2019, patients with MDS at Dana-Farber Cancer Institute, Yale School of Medicine, and Wake Forest University were screened for eligibility using clinic schedule reports in Epic; those 18 or older with biopsy-proven MDS presenting to clinic for RBC transfusions with no evidence of known CHF or unstable angina were eligible to participate. A Hb threshold of 7.5 g/dL or greater was required for participation (Tanasijevic, Leuk Lymph 2020). The QUALMS, a validated PRO for patients with MDS (Abel, Haematologica, 2016), was used to assess patients' QOL before and after RBC transfusion. At consent, patients were given a study packet including a copy of the QUALMS and were instructed to fill out the survey the day before their upcoming transfusion. One week after RBC transfusion, the patient completed the QUALMS again. Surveys were scored, compared, and compiled into a report that was sent to patients and providers (Figure). Based on the QUALMS validation study, we considered a change by 5 or more points to be potentially clinically significant. After descriptive statistics, two-sided Fisher's Exact tests assessed for associations between patient characteristics (ECOG PS and Hb) and post-transfusion increase in QOL. RESULTS: As of July 2020, a total of 57 patients had been enrolled. Of these, 28 (49%) have completed PTQA with both a pre-transfusion and post-transfusion QUALMS. Mean age was 72 years (standard deviation (SD)=11.6), 19% were female, and 89% had had one or more RBC transfusions within 8 weeks prior to enrollment. For the 29 patients who did not undergo PTQA, 11 are still awaiting their index transfusion; 4 passed away before the index transfusion; 4 were transplanted before the index transfusion; 2 developed AML; 7 later became ineligible or were lost to follow up; and 1 withdrew consent. Of the 28 who underwent PTQA, about half had an ECOG performance status of 1, and median Hb at transfusion was 8.05 g/dL (Table). The mean pre-transfusion QUALMS score was 56.1 (SD=15.3) and post-transfusion score was 59.3 (SD=18.0); overall, 35.7% experienced an increase in QOL. Patients with ECOG PS of 1 or 2 were no more likely to have an increase in QOL after RBC transfusion compared to those with PS of 0 (p=1.00). In contrast, 50% of patients with pre-transfusion Hb &lt; 8.0 g/dL had an increase in QOL compared to 25% of patients with Hb &gt;= 8.0 g/dL, although this difference also did not reach significance (p=0.24). CONCLUSIONS: Although PTQA was feasible for about half of patients enrolled, there were many barriers when working with this high-risk MDS population. Moreover, only about one-third of patients experienced an increase in QOL one week after RBC transfusion, arguing that, for some patients, a more limited transfusion schedule may be possible. Disclosures No relevant conflicts of interest to declare.

scholarly journals THE DIFFERENT MENTAL HEALTH PATIENT QUALITY OF LIFE DURING SHACKLING, TREATMENT, AND POST TREATMENT

2020 ◽  
Vol 2 (2) ◽  
pp. 45
Author(s):  
Arif Widodo ◽  
Supratman Supratman
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Human Life ◽  
Univariate Analysis ◽  
Treatment Phase ◽  
Well Being ◽  
Post Treatment ◽  
Mental Health Patient ◽  
Value Analysis

Background: Mental health is a well-being mental state associated with happiness, joy, satisfaction, achievement, optimism, and hope. Good mental health allows a harmonious and productive life as an integral part of one's quality of life by taking into account all aspects of human life. This study aims to assess the different quality of life among mental health disorder patients during shackling, treatment, and post-treatment in Sukoharjo Regency.Methods: Quantitative descriptive was used in this study. Our population was all mental disorder patient in Sukoharjo District who has experienced with shackling and finished the treatment in the RSJD “dr Arif Zainudin," Surakarta during 2011-2015. We took total sampling and excluded patients who died, move to another place, and recover. Thirty out of thirty-four post-shackling patients in the Sukoharjo Regency participated in this study. A tested questionnaire was used to collect the data from the patient. The analysis was performed using univariate analysis – central tendency value analysis. Results: We found differences in patients' quality of life during shackling, treatment, and post-treatment. The survivor had the highest quality of life in the post-treatment phase compared to the shackled and treatment period.Conclusions: The quality of life of post-treatment patients is better compared during shackled and treatment.

Age and sex differences in burnout, career satisfaction, and well-being in US neurologists

Neurology ◽  
2018 ◽  
Vol 91 (20) ◽  
pp. e1928-e1941 ◽  
Author(s):  
Kathrin LaFaver ◽  
Janis M. Miyasaki ◽  
Christopher M. Keran ◽  
Carol Rheaume ◽  
Lisa Gulya ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sex Differences ◽  
Career Satisfaction ◽  
Univariate Analysis ◽  
Well Being ◽  
Independent Predictive Factor ◽  
Burnout Risk ◽  
Professional Fulfillment ◽  
Age And Sex

ObjectiveTo examine age and sex differences in burnout, career satisfaction, and well-being in US neurologists.MethodsQuantitative and qualitative analyses of men's (n = 1,091) and women's (n = 580) responses to a 2016 survey of US neurologists.ResultsEmotional exhaustion in neurologists initially increased with age, then started to decrease as neurologists got older. Depersonalization decreased as neurologists got older. Fatigue and overall quality of life in neurologists initially worsened with age, then started to improve as neurologists got older. More women (64.6%) than men (57.8%) met burnout criteria on univariate analysis. Women respondents were younger and more likely to work in academic and employed positions. Sex was not an independent predictive factor of burnout, fatigue, or overall quality of life after controlling for age. In both men and women, greater autonomy, meaning in work, reasonable amount of clerical tasks, and having effective support staff were associated with lower burnout risk. More hours worked, more nights on call, higher outpatient volume, and higher percent of time in clinical practice were associated with higher burnout risk. For women, greater number of weekends doing hospital rounds was associated with higher burnout risk. Women neurologists made proportionately more negative comments than men regarding workload, work–life balance, leadership and deterioration of professionalism, and demands of productivity eroding the academic mission.ConclusionsWe identified differences in burnout, career satisfaction, and well-being in neurologists by age and sex. This may aid in developing strategies to prevent and mitigate burnout and promote professional fulfillment for different demographic subgroups of neurologists.

Quality of Life in Adolescents and Adults with Thalassemia: A Report of the Thalassemia Longitudinal Cohort.

Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 556-556
Author(s):  
Amy Sobota ◽  
Robert Yamashita ◽  
Yan Xu ◽  
Felicia Trachtenberg ◽  
Dorothy A. Kleinert ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Conflicts Of Interest ◽  
Short Form ◽  
Well Being ◽  
Self Report ◽  
Functional Health ◽  
Longitudinal Cohort ◽  
The Us ◽  
Adolescents And Adults

Abstract Abstract 556 Background: Advances in the treatment of thalassemia have led to increased life expectancy, making outcomes such as health related quality of life (HRQOL) especially important in assessing interventions. However little has been published about the HRQOL of patients living with thalassemia. We report the baseline data from the Thalassemia Clinical Research Network's (TCRNs) Thalassemia Longitudinal Cohort (TLC) study. Patients and Methods: The TCRN is an NIH sponsored network of 16 major thalassemia centers in the US, Canada and London. This study is part of the TCRN's longitudinal cohort (TLC) study. HRQOL was measured by self-report with the Medical Outcomes Study 36-Item Short Form Health Survey version 2 (SF36v2), a generic measure of functional health status and well being with results reported as 8 subscale and two summary measures. It has been validated in numerous populations and diseases, and is considered the gold standard for measuring HRQOL. We report here the results from 245 patients over the age of 14 who completed baseline assessments. Comparisons within the study population and with US norms using t-test and linear regression were performed. Results: There were 245 patients [47% male; mean age 29 years (range 14-58)]. When compared to US norms, TLC patients had statistically significant (p<0.05) worse HRQOL on 5 of the 8 SF36v2 subscales (physical functioning, role-physical, general health, social functioning and role-emotional) and on both summary scales (physical component summary and mental component summary). As is also seen in the US population, women had worse HRQOL than men on all subscales except vitality, and on both component summary scores. HRQOL decreased with age in all scales, more so than expected compared to US norms. Conclusions: In general, adolescents and adults with thalassemia have worse HRQOL than the US population, despite contemporary therapy. Further investigation is needed to determine predictors of low HRQOL so that these may be better addressed by a multidisciplinary team. Disclosures: No relevant conflicts of interest to declare.

scholarly journals Quality of Life Burden Among Patients with Myelodysplastic Syndromes: Analysis of Survey Data

Blood ◽  
2014 ◽  
Vol 124 (21) ◽  
pp. 1303-1303 ◽  
Author(s):  
Sandra E. Kurtin ◽  
Eunice Chang ◽  
Tanya GK Bentley
Keyword(s):  
Quality Of Life ◽  
Risk Score ◽  
Myelodysplastic Syndromes ◽  
Disease Risk ◽  
Well Being ◽  
Statistical Testing ◽  
Platelet Counts ◽  
Part Time ◽  
Over Time

Abstract Background: Myelodysplastic syndromes (MDS) comprise a group of clonal myeloid malignancies primarily affecting the elderly and resulting in limited survival and poor quality of life. A previous survey of MDS patients demonstrated that lower hemoglobin (Hgb) levels and platelet counts are associated with worsening quality of life.1 We conducted a follow-up survey to: Examine the relationships between MDS patients’ quality of life and Hgb/platelet levels;Evaluate changes in these outcomes over time. Methods:The MDS Foundation recruited MDS patients between July 2013 and June 2014 to complete a one-time, web-based questionnaire. The survey included questions about patient demographics, disease risk (i.e., International Prognostic Scoring System [IPSS] score), and MDS characteristics. Quality of life was assessed using the standardized Functional Assessment of Cancer Therapy (FACT)-General (FACT-G; total score and Physical, Social/Family, Emotional, and Functional Well-Being subscales) and Thrombocytopenia scales, all of which were evaluated according to published scoring algorithms. Responses were analyzed using descriptive statistics, and statistical testing was conducted to compare FACT-G scores by categories of Hgb levels and platelet counts. Proportions and comparative results exclude missing data. Results: A total of 727 patients participated in the survey. More than half (58%; 331/570) of those who reported an MDS diagnosis date had been diagnosed for <3 years. Among patients who provided demographic data, patients were on average 68 years of age (n=502), 47% female (234/502), and 90% Caucasian/white (452/503). Over half of respondents (56%; 277/495) had completed 4+ years of college, and 20% (97/498) reported working full or part-time. Less than half (45%; 327/727) reported knowledge of their IPSS risk score; of these, 72% (237/327) were lower risk (IPSS “low” and “intermediate 1”) and 28% (90/327) were higher (IPSS “intermediate 2” and “high”). On a scale of 0 to 108, mean FACT-G total score was 73.1 among all respondents, 75.5 among those with lower IPSS risk, and 72.2 with higher risk. FACT-G total and subscale scores were generally higher among patients with Hgb≥9. Significant differences (p<0.01) by Hgb level existed in all subscales except Social/Family Well-Being (p=0.718), and by platelet count (p<0.02) for all except Social/Family (p=0.795) and Emotional Well-Being (p=0.141). Compared with respondents of the prior survey, current patients were: older (mean age: 68 vs. 63 years); more likely to be female (47% vs. 43%), Caucasian/white (90% vs. 83%), and completed 4+ years of college (56% vs. 40%); and less likely to be working full or part-time (20% vs. 33%). Fewer current than prior patients reported knowledge of their IPSS risk score (45% vs. 53%); of these, more current than prior patients were higher IPSS risk (28% vs. 21%). Results from both surveys indicated significant differences (p<0.01) by Hgb level in all FACT-G subscales except Social/Family Well-Being. Platelet counts significantly impacted the Functional and Thrombocytopenia but not Social/Family subscales in both surveys, and their impact on the Physical and Emotional subscales changed over time. Conclusions: The MDS patient population has changed somewhat but not dramatically in recent years. Their slightly older age and higher IPSS risk may in part explain why current patients are less likely than prior patients to be working, despite their higher education level. Hgb levels and platelet counts significantly impacted most aspects of MDS patients’ quality of life over both time periods. Until therapy options that minimize symptomatic cytopenias become available, more research is needed to identify better ways to improve the physical, functional, and emotional well being of symptomatic MDS patients. Focusing the attention of physicians, family members, and other MDS support structures on these aspects of patient care will benefit patients and their caregivers alike. References Kurtin S & Demakos E. Disease Burden and Treatment Impact associated with Myelodysplastic Syndromes: Initial Estimates. Leukemia Research, May 2011(S) – Proceedings of the 11th International Myelodysplastic Syndrome Symposia. Abstract 560. Disclosures Kurtin: Celgene, Millenium, Onyx, TEVA, Onconova, Incyte: Consultancy. Chang:Partnership for Health Analytic Research (PHAR): Employment, I am an employee of PHAR, LLC, which was paid by MDS Foundation to conduct the analyses described in this abstract. Other. Bentley:Partnership for Health Analytic Research (PHAR): Employment, I am an employee of PHAR, LLC, which was paid by MDS Foundation to conduct the analyses described in this abstract. Other.

Perceived Overprotection and Its Association With Quality of Life in Dementia

GeroPsych ◽  
2019 ◽  
Vol 32 (3) ◽  
pp. 125-134
Author(s):  
Mechthild Niemann-Mirmehdi ◽  
Andreas Häusler ◽  
Paul Gellert ◽  
Johanna Nordheim
Keyword(s):  
Quality Of Life ◽  
Patient Autonomy ◽  
Positive Association ◽  
Well Being ◽  
Negative Association ◽  
Significant Positive Association ◽  
Cross Sectional ◽  
People With Dementia ◽  
Mental Well Being

Abstract. To date, few studies have focused on perceived overprotection from the perspective of people with dementia (PwD). In the present examination, the association of perceived overprotection in PwD is examined as an autonomy-restricting factor and thus negative for their mental well-being. Cross-sectional data from the prospective DYADEM study of 82 patient/partner dyads (mean age = 74.26) were used to investigate the association between overprotection, perceived stress, depression, and quality of life (QoL). The analyses show that an overprotective contact style with PwD has a significant positive association with stress and depression, and has a negative association with QoL. The results emphasize the importance of avoiding an overprotective care style and supporting patient autonomy.

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